Dec 24, 2011 - 2:16 am
I have recently been diagnosed with Rhabdomyosarcoma in my sinus. I am a 29 year old, and am waiting for confirmation from the Sarcoma folks at Memorial Sloan-Kettering Cancer Center. Of course I am scared and confused, but at least early signs seem to indicate that while at stage 4, my other symptoms/location of the tumor and the small size of my tumors (all under 3cm and at around 1cm in the sinus with no spreading to surrounding tissue but metastasis to the nearby lymph node) seem to make me a good fit for some of the successful treatments that doctors are starting to use. I know that I have a long road, but at this point am trying to approach the process 1 step at a time.
As this is a very rare disease,I am wondering what questions/information folks who have gone through this have found helpful. Also, I am hoping to find a place for me and my family to find support from other families that are dealing with this rare disease.